The mother of a seriously ill young rider whose condition has been declining has appealed to the government to ensure she can get the hospital treatment she needs.
Showjumper Evie Toombes, who competes in both para and able-bodied classes and is an award-winning ambassador for those with hidden disabilities, was due to have an operation on 31 March.
Evie, 18, was born with a form of spina bifida that causes bladder and bowel problems. Her digestive tract does not work, and she can only tolerate small amounts of soft oral food and a very limited amount via a nasal tube into her jejunem, part of her small intestine.
The stoma surgery she was due to have in March should have helped ease her symptoms and improve her overall condition, which Caroline said has been deteriorating for the past three years.
“Her surgery has been postponed due to Covid-19 but unfortunately her weight is now so low we are unsure if she can survive at home much longer,” Caroline said.
She added that last October, Evie was given parenteral nutrition – nutrients delivered intravenously – which was very successful, allowing her to gain enough weight to be discharged while plans were made for the surgery.
“While in lockdown, Evie has now reached her lowest weight and is needing emergency infusions of potassium multiple times a week to keep her fluids up and keep her alive,” Caroline said.
“The government guidelines for NHS plans so far have been sufficient for supplying and saving resources to help Covid patients. We anticipated that the government would prioritise saving lives and begin reintroducing cancer treatments and procedures first, before then addressing urgent cases like Evie’s in due course.
“Following the announcement to reintroduce fertility treatment first, our worry is that they are not prioritising saving existing lives. This has left us feeling invisible and perhaps last in the queue.
“Evie is at risk of becoming collateral damage to Covid-19 and our hope is to highlight that there are still existing lives that need saving, before addressing the unborn.”
Caroline added that the family has had “tremendous” support, including a petition to Matt Hancock, which has been signed by more than 3,000 people, but she told H&H she does not understand why Evie was sent home in her condition.
“We’re told this is the safest option as there’s coronavirus on the ward but they’re not looking at all options,” she said.
“The priority is nutrition as she’s not at a safe enough weight to have surgery now anyway; but why can’t she have it at home? People do, but in the whole of the UK, they’re not discharging new patients to have the parenteral nutrition at home because of the virus.
“Evie’s given a lot to the country; doing everything she can even when she’s ill, but I feel she’s been seriously let down and neglected. She weighs 34kg and if this continues, her life will be at risk.”
Keith Girling, medical director at Nottingham University Hospitals said: “Evie needs a major specialist operation that might help improve her nutritional status and the quality of her life, and we are sorry that we have been unable to do this operation earlier this year as planned.
Evie Toombes, who was born with a form of spina bifida, makes "every effort" to compete for her Pony Club
‘If something does happen, I know I’ve had a fulfilling life; that’s all anyone can ask for’
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“However, Evie has been seen at her local hospital each week over the last couple of months, who have not expressed concerns about a significant change in her condition.
“Before carrying out any surgery we need to be confident that we can provide safe theatre, critical care and ward care for our patients. This is no different for Evie, and has been challenging given the coronavirus pandemic that we have been managing.
“We are now beginning planning, within national guidance, to ensure all patients who have been waiting for their planned operation or appointment, including those who are particularly vulnerable from Coronavirus infections, can confidently be treated in a safe way.”
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